Children with Autism Spectrum Disorder and their Care giver

Published on December 19, 2011

Introduction

I was fortunate to have the opportunity to meet with several parents of children with Autistic Spectrum Disorder (ASD), both in the UK and in Singapore. When discussing what life is like, regardless of their residency, availability of support seemed to be one of the greatest factors in determining their sense of wellbeing. As is the case with many severe mental health disorders, the disorder does not only affect the person who is suffering from it. For many caregivers, life is tough and even less support offered to them.

Autism Explained

Autism is perhaps the most complex and intricate developmental disorder. As a childhood behavioral condition, autism is defined by the presence of marked social deficits, stereotyped repetitive behaviors, and certain language impairments (Rutter et al., 1988; Charman, 1997). It is a lifelong developmental disorder, and is generally termed Autism Spectrum, or Autism Spectrum Disorder (ASD).

Many of the children diagnosed with this disorder do not possess all the characteristics originally described by Kanner (1943), but instead demonstrate some of the attributes of ASD. These attributes include failure in the development of emotional connections seen within typically developing children. Restricted language ability, often demonstrating immediate echolalia, whereby the child would repeat exactly what had been said or delayed echolalia in which the child would repeat a previously heard sentence out of context. A third characteristic Kanner documented was the child’s inability to correctly use nouns, often referring to themselves as “you”. The children appeared to be comforted by routine, showing signs of distress if this were to be altered.

Kanner found this level of rigidity extended into their ability to play. He noted these children lack imagination and emphasised their enjoyment for play repetition. The National Autistic Society (2009) defines the three main areas of difficulty children with ASD commonly posses, known as the ‘triad of impairments’: difficulty with social communication, difficulty with social interaction and difficulty with social imagination.

Impact to Caregivers of children with Autism

While it has been found raising a child with any learning or developmental difficulties is mentally and physically more exhausting, taking up a great deal more of the parental resources and energy than raising a ‘typical’ child, no study to date has found a group of caregivers with higher distress and anxiety levels than those of children with ASD. Stress is a significant factor in the parental ability to raise a healthy ‘typical’ child. Indicating, the availability and quality of the social support, be it spouse, family or local authorities, appears to be one of the key factors in alleviating or provoking the onset of stress.

One of the most stressful occasions that became apparent throughout the discussions, was during the diagnosis period. Each talked about just how insufficiently supported they felt for a number of different reasons. Each described their own determination was the push for diagnosis, but then experienced feelings of confusion and being alone once a diagnosis was offered.

Kabot et al. (2003) reports parents and professional are forced to make decisions on very limited amounts of information. As these parents did, each then turned to the internet as a source of information, to provide a path and hope. However, the Internet exposes vast amounts of negative and disheartening information. Kabot et al. (2003) commented on the danger of Internet usage. Intervention and treatment can be advertised with little or no professional basis for the intervention. Meaning parents are exposed to poor treatments, some with no evidence of success.

Diagnosing Autism

Huge amounts of literature have been compiled on the age ASD can be diagnosed at. London (2001) expressed clinicians’ reluctance to diagnose autism too young in case of misdiagnosis. This was very apparent when talking to this group of parents. Each revealed a confusion and delay in gaining a diagnosis.

Volker & Lopata (2008) discussed the inappropriate waiting time resulted from the shortage of evaluation clinics, calling attention to the problems this caused in delaying treatment intervention. However as expressed, each were sure of their child’s disorder, and felt far more in control once a diagnosis had been given. Leading to a healthier outlook on their new life. Advancements in treatment has found it is possible to detect the manifest behaviors that categorize ASD from a much younger age (London, 2001) and especially within siblings, who have been found to have a much higher risk of having ASD, early diagnosis leading to earlier intervention is imperative (London, 2001).

Caregiver support

A continuum of support was also found to be key to the success of the parents coping methods and their outlook upon life. In concurrence with Herman and Thompson (1995) each parent described their spouse to be of beneficial support . A number of studies have shown a reduction in stress levels and higher feelings of well-being if each partner felt supported by their other half. More positive attitudes towards the child were also noticed when the primary care giver felt better supported, indicating that spousal support is often hugely significant in coping positively with a child with autism (Boyd, 2002).

In light of this, and due to the change in society with the meaning of ‘family’ becoming much broader, services need to look into ways to best support single parents. At present, support for those who do not have a spouse and therefore fully rely on the state does not exist within the UK, however there was a noticeable difference when talking to single parents from Singapore. Each described one of the benefits in living in Singapore was the realistic availability to hire a live-in helper thus relieving some of the pressure that comes with raising a child with ASD.

Joining Support Groups

A sense of detachment from the wider community also came through when talking to these parents. Each described the stigma felt in their social interaction with others. This stigma (defined as the discrepancy between expected attitudes and actual attributes in reality) often leads to a parent’s perception of others being critical. Through these stigmas, caregivers who would normally achieve optimal feelings of competency from social interactions (Ryan, 1995), in particular the mothers, are often left with a feeling of inadequacy and shame, because of this judgment felt upon their mothering skills (Gray, 2002). In the UK support groups of parents of children with ASD are therefore essential. These support groups enable caregivers to talk freely and openly, in an environment where judgment is not an issue.

Within the support groups the parents felt valued and validated, being faced with the benefits and meanings of their common experiences. However, this is one such factor that not one Singaporean parent mentioned. None of which expressed a desire to interact with those who could were in a similar circumstance. Instead the parents who described the strongest feelings of competency and belonging were those who had the strong support of external family members. It appeared only this support group was enough to reduce the feeling of inadequacy or shame and give, in particular, the mothers a sense of confidence and reduced sense of detachment.

Although the parents within the UK did not feel this stigma to such as extent as in Singapore, it is clear a stigma still remains and needs to be addressed. Within the UK many of the schools, now have special education units attached to a mainstream school, by broadening these scheme whereby children with developmental difficulties could be paired with those ‘typically’ developing children throughout schooling could be one way to help break these stigmas.